Wednesday, November 16, 2011

Hi, everybody. So sorry for taking so long to write. I have been going through a little shell shock. Thank God for all the information out there on helping caregivers from falling into self-destructive behavior. It is easy to get mentally wrapped up in things that have no logic or reason.

The best thing for me to do to explain where we are at is to share this information with you. We've been here for awhile, and I suspect we are moving towards the next stage.

This stage is where really significant personality changes can emerge. That sweet person you used to know suddenly is combative, volatile and possibly violent at times. The Alzheimer's Association says that at this stage, people lose "most awareness of recent experiences…as well as their surroundings."

People in this stage can be very inventive, when trying to outwit thecaregiver. They are also prone to wandering, so keeping them safe can be a challenge. They've been known to find ways to unlock several locks on doors and to enable a supposedly disabled car. They are not dumb, folks. This isn't about intelligence.

Caregivers have been known to remove and hide car batteries. People sometimes get alarms installed that are meant to let you know if someone is breaking in, but they get them so they know if their Alzheimer's afflicted loved one is breaking out.

During this wandering prone stage, an Alzheimer's afflicted person must be watched carefully, as an unfortunate number of them have, literally, been stranded out in the cold. There are alarms and ID bracelets and other forms of protection on the market that can help keep track of, or find, someone who is wandering.

Stage 6 is also a phase where, according to the National Alzheimer's Association, "(People) lose most awareness of recent experiences and events as well as of their surroundings."

They often don't remember their own histories and can forget the names of people they love (though they usually recognize faces). They need help dressing and toileting. This, too, is the stage where the sleep cycle is greatly disturbed for this person (to say nothing of the caregiver's sleep cycle).

Late day/early evening confusion, often called"sundowning,"where the person is agitated and confused is thought to have to do with light and/or activity changes that trigger the Alzheimer's patient's need to do something important, but they don't know what (perhaps it's time to "go home from work?"). Whatever the cause, this is a difficult time of day for many caregivers and dementia patients.

Stage 6 is also the phase where the caregiver will witness more paranoia or suspicions ("they are trying to steal my dentures"). Hallucinations are not at all uncommon, and compulsive behaviors such as picking, tissue shredding, scratching and hand-wringing can occur.

This is often the phase where the person with Alzheimer's may need to be moved to a secure environment where they are safe and the caregiver can get some relief from the 24/7 job of caregiver (often that occurs earlier).

As you can imagine, I am crazy busy most of the time between teaching, picking up after Bill's tinkering, and keeping an eye on him. He loves to screw with me and hide and stuff. Crazy. In fact, the entire article paints a clear picture for us.

I have loved seeing so many of you recently. I love you all and am so glad to have you there with me in heart and soul. I get sad and lonely when things get crazy. If hugs can be packaged and mailed, put me on your mail list. If not, alcohol works. Jus' kidden...

Saturday, October 8, 2011

It is time to update my journal. I don't even know where to begin. We've been keeping really busy. I've been muddling my way through paperwork and red tape for the VA. Past income makes us ineligible, so we have to request consideration for an emergency status. We will be eligible, but there is a process. There are several lengthy forms involved and I have to write out details of the past two years, including dates. I think I have gathered most of the required material. Maybe one day I'll turn it into a book, lol. I've got a great partner to keep me on task: My mom! She's helping me keep the momentum going in all areas: resources, supports, paper work, keeping the contractors and insurance transactions going, getting insurance lined up for all of us, etc. So much to do!!! Mom cracks that whip. Bill will see me slacking, and he narcs me out to her, too. Jeeeeez Louise somebody wake me up. Getting it from Lucy and Bill slightly interupts my perfect little cocoon. Negative waves, man....

Bill is very busy, which keeps me on my toes all the time. I won't lie. Some days are pretty tough. I answer the same questions over and over, am questioned about why I keep things from him, it gets pretty tiring by the end of the day. I have to get better at this. Bill picks up on my frustration and it makes him feel really bad. He starts apologizing, and I feel about an inch tall. I am better than that. I can be such an emotional addict. It is probably my number one priority focus in my spiritual life, the need for balance. I realize where I'm at, Miss Grumpy, and then I stop to listen to what he is going through. He talks about not being able to find his way from room to room. He has to stop, get grip, and work his way through it. And it happens over and over and over, constantly. He fights panic attacks on really bad days. Those are the wacko days for certain.

Bill went for several weeks where his grooming was getting pretty awful. We are swinging back into the opposite, thank you Lord. He finally let me trim and shape his beard a couple of weeks ago. From there he went to town. Yesterday he came downstairs clean, shaved, and wanted me to clean up the back of his neck, etc. Wow. He looks twenty years younger.

Once we get Bill established with the VA, we will get Dr's established. Back in Michigan, the doctors told us it is important to keep busy. I try to keep him pretty busy. It is hard to get him to go somewhere for very long, so I love it when the friends drop in . We love it when you stop by to see us! We were walking through a book store and Bill ran into the original Warden from the late 80's during his career at the prison. He enjoyed that. We also celebrated Harvey's 70th birthday with his family and friends. We saw several of Bill's past co-workers from the DOC there. It was nice to see "the good ole boys" again. Oh, and in case you don't know (shhh, this is top secret.) Harvery is the real Santa.

This is Jack and Harvey- I mean Santa on one of his many visits. When Jack was in about the third grade a kid told him that Santa wasn't real. Jack looked at the kid and said, "I'm not taking any chances. I've seen him drink beer with my dad."

We also got to go to the Miller's famous Bike Fun Run. George started it years ago. He would be happy to see generation after generation of family, friends, and those that "show up" carry on with the races, building a great track, fun and competition. I didn't take any pics- too busy keeping Bill from getting ran over. He got ansy and we left earlier than usual.

I think the highlight of our past few weeks would be the invite to ride with Mike and Kim Baughman in the Antique Car and Hotrod Cruise the night before the big show. Mike has an incredible vehicle.

It is a 1955 Chevrolet tweaked out to the max. Mike has also installed a little "entertainment center" in the trunk including a high def screen for music videos to liven up any "tail gate" parties.

Count us in, honey. We had a blast. Of course it was a little tricky keeping Bill inside the car. He hung out the window waving and hollering at the admiring car. Thank you, Mike and Kim. Bill's auto hormones were in full swing...

Mike's first chop shop was in his garage. He was about ten, probably. He and his brothers would take bikes apart to modify theirs, lol. They could sweet talk me into my bike parts without batting an eye. Uh huh, sure Mike.

I am learning lessons in compassion, patience, seemingly about every personality tribute I've ever admired. I hope I can live up to the type of person I think I am.

Saturday, September 17, 2011

Thank God it is not like this every day.

Let me tell you about my day. It's been a weird one. True story. Honest to
God. I could not make this up, lol. I get a text from a friend asking if I know
where Bill is. He was sitting here with me. No prob. I learn that there is a
bank robbery going on a block from my house.Brenda was concerned it might be
Bill in one of his weird moments. Bill hears me talking to Brenda, and figures
out what is going on less than a block from us. Bill gets that look in his eye
and snaps into la la land. He runs upstairs and grabs a rifle. It's a WWII
Japanese rifle that my father in law took off one of the enemy in the day. So he
is hell bent on going out armed with this gun. I am blocking the door.Talking
him out of it. Can you imagine? An armed man walks up to a bank that just got
robbed. It took me forty-five minutes and some serious meds to deter him today.
I took these without him realizing it. My heart was pounding, let me tell
you.

Look at his face in this one. It was too surreal. Now he's sleeping. When
he wakes up he should be back to earth .

He was into the role of the Patriot. Quoting his rights. I kept reasoning,
you can't go out there. They'll shoot you. They don't know if you're the good
guy or the bad guy. I finally just agreed that "they" (unknown for sure?) are
just crazy, and he can't get shot up. Is that nuts?

I really am doing ok. It's not like this every day (thank God). I
rearranged the Master bedroom so the bed is flush against big French windows.I
made a great sitting area and a place for me to work out in the Master room and
the way I have the bed positioned, he has to climb over me in the night so I
don't wake up to as many surprises. I woke up one morning last week and Bill has
rearranged the living room. All the furniture was lined up on the three walls.
Very strange. The whole north side of my living room, kitchen, and sunroom was
opened up and the furniture clung to the edges. That's a huge open area, lol.

Friday, September 2, 2011

Hi, guys. We are recovering from some drama from last weekend. Bill had an extremely intense day on Saturday. He had refused to take his meds while I was gone. The meds don't stay at a therapeutic level once they are stopped and every time you stop taking the meds, you are only able to stop the progress of the disease from the point you begin the meds again. It can prolong the effects of the disease but not stop the disease.

Watching Bill go through confusing times is difficult. He was in an accident last weekend. He is pretty torn up from the seat belt. He also sent a woman to the hospital from the other car. She was released. Bill totalled old Betsy. We've had Betsy since we got married- 24 years on September 5. Betsy was a trip. She was originally maroon but when we applied for his last couple of years parking permits for Betsy, we have listed the color as rust. The driver's seat has this well formed whole that just fits Bill's tiny hiney. She was always immaculate, never dusty, never any gravel or leaves... pampered. Between losing Spike, our 14 year old miniature poodle and losing Betsy, Bill has been grieving. He was ticketed, and I did get notice yesterday that we are being cancelled by our insurance. When it rains it pours.

I wait for those times when the old Bill breaks through. I grab him and try my best to communicate, to talk to him. We both grab onto those moments. He tells me how strange it is to be lost upstairs, how difficult it is to keep track and keep things straight. He usually tears up, but he's open and very honest when it happens, and he is always apologetic for his anger and frustration and talks about getting better.

The day Bill had his wreck, I had followed him around all day long. He was determined that Betsy needed oil. He was obsessed. He'd come and get me, and I'd show him the dip stick and say, see: it's full. She doesn't need any oil. He was determined. Throughout the day he added 4 quarts of oil to an all ready filled engine. I expected him to blow up the engine, but never in my wildest dreams did I expect him to drive off without me. He jumped up (granted, for the 150,000th time that day and I had followed him instantly 149,999 times.) I said, "Where are you going?" "Out to check the oil! By then I had locked Bill's car and hid the keys and had sent Jack to Grandma's in case he decided to work on the hybrid. I turned to grab my shoes, ran the dog to her crate, and walked outside. No truck. No Bill. For two hours I waited to find out where he went.

When the Sheriff drove up, all I could say is, "do you have my husband?" I figured they had arrested him, the funk he was in. They had him. He'd been in a wreck. My heart stopped. I couldn't breath. He wasn't hurt and the woman involved would be OK he assured. I jumped up and followed the Sheriff.

When we got there, I had explained Bill's day, the early onset of Alzheimer's. I learned that Bill had been tested for a DUI and of course passed. Bill was agitated and was very upset. He was very angry with me, calling me a traitor for sharing his personal life with the cops. The anger lasted for several days, but he is coming back around, both cognitively and behaviorally. He still has difficulty processing information, but he checks in often.

After a couple of days, he mellowed and Bill's memory of the wreck is a tad bit different than the police report. Here is the report of the wreck in Bill's own word. Perception is everything.

The wreck really brought up some weird grief stages. Ewwww, I hate grief. I do not like it when I cry. I want a plan. I want to follow the plan. I want to get from point A to point B without going around in circles.Grief can have a paralyzing affect. It's like being in a state of walking in your sleep. You get more and more frustrated, and try to pull out of it, but you just can't quite wake up.

Yesterday I opened up my devotional. It had four simple words. Wake up and live.That's it. That's all it said. So that's where I am starting. I think it' OK to grieve for awhile, but I have to live in the moment rather than being frozen from grief and miss the good things going on around me. So I prayed for God to use this somehow for the good. Give this purpose. We're both trying to move back to living life to the fullest, to love life and breath it in and appreciate today for today.

Wednesday, August 17, 2011

Hi, guys. It's been awhile since I've posted. While the move to Kansas is over, there is still some unpacking, there has been some decline in Bill's memory and his frame of mind, and it's been pretty stressful. My dad passed away ago the end of July to add to my emotions, and it has been a challenge keep balance in my life.

The move has been a wise one although Jack and I miss our friends and the upper peninsula of Michigan very much. I have held up pretty good until just recently, but I have reached a pivotal moment where the stress was really getting me down. Recently I have had the opportunity to reunite with many wonderful friends. I also had the opportunity to step away and take a break at a sort of training. It was refreshing. The reunions and the trip brought back so many memories. Reconnecting with several wonderful friends from my past makes me think of an old Girl Scout song, "Make new friends and keep the old, one is silver and the other gold"). I don't know. I guess it was overwhelming. Finally the dam of emotions brimmed over in an emotional moment and all these tears just started falling and falling and falling. I know it is part of healing. I know it is a necessity of life, but it is very painful. I know I always talk about the positive as a general rule, but I also know how deeply important it is to face the fear and the pain and frankly, the exhaustion. It is ugly and while it does not need an overabundance of attention, it has to be recognized.

Bill has been up and down since our move. In many ways the move has been good, but Bill has not fully recovered from it. I noticed an increase in confusion when I was packing to move. He can still pull off a conversation with a peer, and loves to talk about his students, his research, and his years working with Al and Harvey at the prison, but it is getting more and more difficult for him to keep track of things. His latest focus is on losing his wallet and his keys. He knows his days of driving are limited, and it is pissing him off. I heard him say the other day, "Goddamn it. I have a Ph.D. Why am I so confused like this?" and jusone dayt last week he said, "I don't know how much longer I can live like this. It is killing me." He's more upset and agitated and paranoid. I suspect he is entering into another stage. I came home to an upset son because his dad refused to take his medication the entire time I was gone. While Bill's meds help a great deal, the therapeutic levels drop very quickly- even missing a day makes a difference. And the drugs can't make you improve. It only makes the progress slower, so we took several steps backwards this week.

Jack is going through being so afraid for his dad that he will barely leave his side yet when they are together the testosterone can throw you to the floor. I usually solve this by spraying some flowery air freshner and tell them to break it up. They both hate air freshners (chemical demons) and it usually takes the focus off of who is right and who is wrong. I wish this was not the memory Jack is going to have of his dad. I try to remind Jack that it's not his dad. It's the disease. He told me first he had to lose his grandpa, and now he's lost his dad.

So I guess it's ok for me to be pissed off and sad and to be trying to find some sort of direction and purpose in my life. Will I be enough? How do I help Jack? One friend who I reconnected with briefly this weekend shares somewhat similar issues with his spouse. You know, we talked about where is that fine line where you cross over between supporting your spouse and their authority over protecting your child. There is a line. I know there is.

It's kind of an emotional update and things will hopefully level off. It took some coaxing but I did get Mac to take at least his morning meds today. Today he doesn't know how to answer the phone and he can't work the remote on the tv and satelite. He gets focused on something and will repeat the same thing over and over. I hung his diplomas last week and he didn't know what they were. Light switches totally blow his mind. He complains a lot about light bothering him. He is up late late (sundowners, like 1 or 2) roaming around, frequently breaking things or moving them. He doesn't remember the next morning what he's done. I mean he authentically does not have a clue.

Of course I am crying as I write. Those that have stayed in contact with me over the years know I don't like jagged emotions and put up a huge fight to remain positive and to believe there is a purpose in everything.

I have gotten some wonderful relief this weekend. To finally bring up those feelings and face them was very difficult. I hold my "extreme" emotions in a locked box deep in the center of my soul and seldom let them merge. It has truly been a spiritual experience. I have also been overwhelmed by the warm welcome home from so many of our friends. Thank you, my friends. You make me feel safe. You make me feel loved. You remind me we really are not alone. It restores my faith. I love you all so much.

Friday, July 8, 2011

The packing is all done. The trucks have come and gone. We've slept here in our first and favorite house for a couple of weeks, now. Most of the boxes have been unpacked and things are beginning to find homes. My courses are set up and I have officially been in session for two days. My office area isn't organized yet, but I have been doing my live sessions from the sun room. It's nice back there. It's always had a warm, cozy feeling.

Bill is adapting quite well and I am so happy. He is remembering where things are. He rides his bike around town. He is going to be able to maintain his independence a lot longer and safer here. The move really pushed us. Painfully at times. My mom came the last month to help me with packing and with keeping Bill company (and safe. He loves to drive. Scary in the city.) We are there, things are coming together, boxes are slowly disappearing, and the house is beginning to gain back that unique cross between the Beatles and nature lifestyle that Bill and I take such pride in participating. It's good, and it's getting better. There are sections that are flat out scary. Blame it on the strokes, lol. (Attn: Barb. That was for you, doll.)

On the last day of work, several of my favorite people from work came to say goodbye. I didn't capture everyone on film and I thank all of you for coming.

Dave is one of the best special education teachers I have ever worked with. I love Dave for many reasons: I love his dedication to the kids. I love his dedication and commitment to his family. Dave is a man of high morals. He sets his standards high and abides by them. I have such admiration of his honesty. I also admire his love for mother earth. I learned so much about forgiving, for looking for the best in people, and for learning to "give it to the universe."

Then there is my sweet friend, Barb. Barb is absolutely sister material. Right now she is cursing me for putting her picture on my blog. Barb has this heart made of gold. She has a natural way with the kids, and they adore her. She is on her way back to school for the second year. She needed someone to believe in her, and I couldn't help but believe in her. I see her goodness. Her uniqueness. Her ability to overcome everything that stops people from following their dreams, and she leaps over tall buildings in a single bound. Ok, maybe not that, but the girl can go from standing on the floor to standing on the table in one giant step. Amazing.

So the last day of school, all the materials are in boxes, all the I's are dotted and the t's are crossed in final reports. All Medicaid billing is done. The company end of year picnic is over (it was freezing, by the way.) I am taken to one of my two favorite mom and pop beer joints (one of my favorite terms used by my dad). The bar tender made me a yooper's version of long island iced tea. It melted the gold caps in my teeth. Seven straight shots. Holy. Tammy, my favorite bar tender from Joe's, helped coach the bar tender at Dan's. I think there may have been some sort of a conspiracy to get me to dance on the table top. I was able to avoid that temptation this time. America's funniest videos my ars. Luckily I was able to capture this photo of Tammy giving a vivid demonstration of an exercise designed to eliminate double and triple chins. I don't know. Her husband just sat there and grinned. Poor Shelly watched and got a little bit confused, grabbed Barb, and, well, you can see the surprise on poor sweet Barb's face. Eegads, can't take these two gals anywhere. No social mores, lol.

Shelly took it very personal- as a hugs triumph in flooring her buddy, Barb. Shelly, you win!

In the mean time, Dave and I are on the beach making lesson plans for next year if you need me. I wish. What a great job I have had for the past five years. Thanks for teaching me to slow down, soak in what God has to offer you every day, stop and smell the roses, and so on.

Thursday, June 23, 2011

We are home. We are so happy to be here. The house is coming along very nicely. The majority of the inside is completed. There is lots of cleanup and taking back control of nature outside and we have some decisions to make on the outside of the structure, also. Bill has had some very confused moments, and the clutter of all the unpacked boxes makes it tough for him, but over all he is holding his own. Jack is in social mode. Go Jack. I am about one third unpacked. I can't believe how cool the color schemes turned out. Go Lyn! On the way here we saw harvest in session. Haven't seen that in about ten years. Nice. We've connected with Al and Bob. Bob came to the house Wednesday with cinnamin rolls from Yoder (can't even describe its goodness) and helped moved furniture around and around and around. LOL. I guess moving a pellet stove on a pallet plus the marble fireproof flooring is a bit on the heavy side. Thanks, Bob. It looks great.

Sunday, June 12, 2011

The last two weeks of school have been jam packed with field trips, cleanup, and socialization. What an incredible ending to my tenure here at the EUPISD. It had its quirky moments, but that is part of the name of the game in education. We decided to end the year with a bang. Becky's lake house is always a fun trip. Becky has a deep love for our group, and every year she has thrown parties for us at her house. In the winter we go snow mobiling and sledding. In the early summer we go to her house to enjoy the sun. This trip was a huge hit. We pull up in buses and all of Becky's neighbors join us at her house for fun in the sun (with a little luck). We were not disappointed. We rode and drove golf carts, the favored mode of transportation back and forth between houses. I don't know who had more fun riding and driving: the kids or the adults. We all loaded pontoons and deck boats and toured the lake, watched the swans, and enjoyed our day in the sun. The kids and staff all enjoyed our day at Becky's. Good food, good fun, lots of friendly, loving support. The sun, sand, and water were delightful. Becky, you are more than a friend. You are part of our family and we love you. Thank you for the being a friendly, loving friend.